Stage 2 Sisters Club
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Hi domi26, I have also lived in Europe and they don’t necessarily do the oncotype dx since the sample has to be sent to California. Mammaprint is a similar test and they work out of both California and the Netherlands. The markers you mentioned are low so extra testing might not have been done because of that and the cost of those tests. I had both a positive node and LVI but chemo was still not recommended (just extra radiation.) I hope things work out well for your mom.
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Hi I’m new here just starting my journey. I’ve read all of the older posts and was hoping that a lot of you ladies might still on here. I’m thankful to be able to read through all the posts as it gives me hope that I will get to the other side.
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I'm still around! Feel free to ask any questions you might have!
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thanks for responding maggie15 and Ruthbru ! I had my biopsy done on 12/5/24 and am waiting for the results. I already have a breast team on stand by at John Hopkins Hospital in Baltimore. To say I’m Scared to death is an understatement. I am a 15 year cancer survivor of Hodgkin’s Lymphoma. I was incredibly lucky to have an amazing oncologist who had the best bedside manner and who was smart and caring. He retired about 5 years ago.( I was stage 2 b) and 38 years old at the time. I’m now 53 and not in menopause yet( 8 months without period). My lump in left breast was measured at 2.3 cm and radiologist said she couldn’t find anything in left armpit (by sonogram or touch). Just really scared of the unknown right now.
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Hi ssales13, The waiting is very difficult. Hopefully you’ll get a benign result but if not come back with questions. Johns Hopkins is a very good hospital. I used to live on the Eastern Shore; at this time of year I miss the mild winters there. All the best.
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thank you maggie15. Yes I’m thankful that our winters are pretty mild here too. I hope you have a nice day.
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Let is know when you get the results. The waiting is the worst part, for sure!
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thanks ruthbru I will.
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ok just got off the phone with the doctor about my biopsy results. It’s invasive ductal carcinoma grade 2. She said right now it looks like it’s contained in the one breast ( left) with clear nodes and said at this point it looks like a stage 1 or low 2. But that it could change after the surgery is done. Also I contacted the hospital and let the patient coordinator know and she is relaying the message to the team and will be setting up an appointment with the oncology surgeon. I’m nervous but this is all good right?
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Hi ssales13, I'm sorry your biopsy came back as IDC. You can't determine exactly what your full treatment will be until after the surgery. Generally it will be surgery including a sentinel lymph node biopsy, radiation therapy if a lumpectomy is chosen and an estrogen blocker if the cancer is ER+. Do the biopsy results mention the hormone receptors, ER, PR, HER2? So far it sounds like you picked the thread that correlates with the most likely diagnosis. At this point whether chemo is recommended depends on the oncotype 21 genomic test for ER+ tumors which is submitted after the surgical pathology is completed. With a low grade tumor the test often comes back as chemo not recommended.
As far as surgery goes you may be offered a choice between a lumpectomy and a mastectomy. People choose one or the other for a variety of reasons but you might want to read up on these surgeries to consider the pros and cons. I had a lumpectomy and radiation. My tumor was 3.2 cm but an oncoplastic lumpectomy gave me an excellent cosmetic result. If you had radiation for Hodgkin's, however, a mastectomy to avoid more radiation may be recommended. The surrounding organs such as the lungs and heart can only safely take a certain dose over your lifetime. Unbeknownst to me I had occult interstitial lung disease and ended up with bad pulmonary side effects from rads so make sure you discuss this with your doctors. If you have a mastectomy you can choose to go flat or have reconstruction with either an implant or a tissue flap taken from another area of your body. There is lots to consider but you are being proactive and looking ahead. You are being treated in a hospital which sees cases like yours so you should get good recommendations on treatment.
This is no fun but it is doable and you will feel better when there is a treatment plan in place. You survived Hodgkins so you are not a total newbie to the cancer world. Stay in touch with questions and your progress. Hugs for you.
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I had a lumpectomy with radiation too. If that is an option; it's what I would recommend as it's not as invasive, has a quicker recovery time & reconstruction is a long, drawn out process. What I'd do right now is schedule any dental checkups, cleanings, procedures etc. for now before you get into whatever cancer treatments you will need to do. For the record, I needed chemo; which was not fun, but not as horrible as I thought it would be. So, if it turns out you need to go that route, it really is not the end of the world.
- I could NOT sleep during the diagnosis, treatment phase & asked for a prescription sleeping pill, which probably saved my sanity. So, whatever things you need to do to get you through this are okay!!
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Hi maggie15 thank you for responding and thanks for the hugs! They are greatly appreciated .No it didn’t mention hormone receptors. Will the surgeon go over the cancer thing with me and give me more info? Or is he or she only going to focus on the surgery side of things? And the Regular oncologist for the treatment side? When I had Hodgkin’s there was no surgery so this is new to me.
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ruthbru thank you! Yeah I’ve pretty much come to terms with chemo. I have a feeling I won’t be doing radiation. When I had chemo for Hodgkin’s it was abvd ( which the first one was adromyicin not sure if I’m spelling that right! The ‘v’ is n that was vinblastin and I ended up with pneumonia from that so instead of 8 rounds of chemo I did 7 and a 3 day hospital stay .With the radiation I did 28 daily sessions. Just hoping to get through this with the least amount of SE’s
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Hi Stacey, The surgeon should be aware of the hormone receptors so you can ask at your appointment. Is your biopsy pathology report available in test results in your patient portal? That would have all of the known information if it is.
If you would prefer to have a lumpectomy make sure the surgeon consults with an RO (radiation oncologist) if you have previously had radiation. I didn't meet my RO and my MO (medical oncologist) until my first post surgical appointment. That's probably because what is found during surgery determines other treatments and sometimes there are surprises. My tumor was bigger than it appeared on ultrasound and I had one positive lymph node so needed to have my axillary nodes radiated in addition to the breast.
Your team of doctors depends on your treatment. I didn't know that breast cancer has so many varieties. I still see my SO(surgical oncologist)'s NP after mammograms, MO and RO (just because I am in his clinical trial; most people don't see the RO after the final 4 month post rads check.) If you have a mastectomy with reconstruction you will probably have a plastic surgeon involved as well. While tissue flaps are more complicated than implants previously radiated skin tends not to do very well with implants. I don't want to scare you but I'm hoping what I learned will help you avoid problems. Most people don't but I also ended up with a pulmonologist who attended Dartmouth for undergrad and did med school, residency and fellowship at Johns Hopkins; we always have something non medical to discuss because of that.
It's a lot to take in to begin with but you seem to be doing a great job keeping calm, learning about your diagnosis and advocating for yourself.
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thanks maggie15. I’m gonna check the patient portal and see what I can find. Also appreciate the advice. Have a nice evening
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ssales13. I am sorry to end up with BC. I found mine in late June of 2021. From the gate, I after my Ultrasound and biopsy said Stage 2 breast cancer I sprang into action. Two choices for treatment were local surgeon or the City of Hope. I went to my insurance and found a breast cancer surgeon at COH in my plan. I kept the paper she made notes on for me about my possible treatments. I was not large breasted. That can make the difference in the lumpectomy or mastectomy. I knew by my surgeons drawing my tumor was 5cms. Removing it with margins would leave little breast. I got the genetic test after saying BRCA2. I had 12 weeks of Taxol/Carboplatin and 1 Red Devil. I ended up with Pancytopenia. My tumor shrunk just 1/2 with that chemo. Really God I said again!!! This was dec of 2021. They gave me a Chemo drug, one of the Olaparibs. That too moved me to pancytopenia. Surgery was planned in January as my tumor was still slowly growing. Covid set me back, so the surgery was early Feb of 2022.
I did not search the internet at this time at all. I found this site from a friend who used in in late 2021. Reading here and asking questions of my medical team worked for me. Much more has transpired since them, but all of it, few side effects really, has been done a day at a time.
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Well I have an update. Last Wednesday I had an appointment to see the breast surgeon . She came in and examined me and restaged me from 1A to Stage 3. I was devastated. She said with my breast being swollen and red and lump close to skin and lymph node that she felt under my arm pit was the reason for the stage 3 diagnosis.she also said the lump was around 5 cm (during the biopsy I was told the lump was 2.2 cm ). I am scheduled for a petscan on 12/31. She said she fears that the cancer has spread and that I’m really a stage 4. I’m so scared. I don’t want to die. I’m 53. So I’m IDC stage 3 grade 2 Er + and Pr + hers 2 negative for right now . Please pray for me Thank you for listening
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Hi Stacey, I'm so sorry the breast surgeon gave you worse news. It's not that uncommon for the biopsy information to be updated. A 5 cm tumor with lymph node involvement would put you at stage 3. There is no way of knowing what the pet scan will show so don't assume the worst quite yet. I have what appears to be a bone met in my hip socket (which can't be biopsied) but it is staying stable so I'm hanging in there under surveillance.
There are many stage 3 people who come back and let us know that they are still doing well 10,15, 20 and more years later. A stage 4 diagnosis is no longer an immediate death sentence. There are many new treatments which make the statistics you read on google out of date. People with stage 4 who post here are living years longer than they thought they would. Also, you are being treated at an excellent hospital which will have the most up-to-date information.
You will be in my prayers. I hope you get the best news possible from your pet scan. Hugs, Maggie
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thank you Maggie for your prayers and kind words! I’ll be praying for you as well!
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i ended up getting progressively worse news but it ended up being not so bad after all. I got diagnosed this March 14th with IDC ER+ PR+ HER - . They originally told me I had a 5mm tumor. After the mri they told me it was 5.2cm and I would have to have a mastectomy and radiation, and maybe chemotherapy, based on my oncotype. I had a unilateral mastectomy on May 1st and that went well. Biopsy was weird though. They said the tumor was discordant and that it mimicked regular breast tissue. But, thankfully they figured it out with extra staining that the tumor was not one but two, growing towards each other with 4.0cm and 1.2cm. So no radiation for me and oncotype was low so no chemotherapy. They took 9 lymph nodes which were clear. I had DIEP flap surgery May 21st which went well, too, all things considered. Another surgery on November 13th to use fat graphed from my backside to help with symmetry. The surgery went well but I have been itchy all over since then. Not sure what is causing it.
All that to say I hope you get better news in the future and receive a better overall prognosis. Best wishes from Texas.
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thank you asbirdwell. I’m glad you did not have to do chemo or radiation. That’s awesome news.
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Ssales, I am sorry that you got bad news. Remember that they really don't know anything for sure until they do surgery. Stage 3 is not what anyone wants to hear, but it is still CURABLE. I have several personal friends who are many years out from that diagnosis without a recurrence. Try not to let your mind go to Stage 4 until after the PET scan, but others are correct when they say that with today's treatments it can often become more of a chronic condition that you LIVE with. There are several stage 4 ladies who are friends of mine from these forms who are many years out. Hugs & prayers coming your way. Hang in there!
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ruthbru thank you for your kind words. I’m trying to stay positive. I’m just so scared.
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It is a terribly scary time. 💓
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